[Perineural cysts are common findings on MRI done for other diagnostic purposes. Most are located in the lumbar, low back, or sacral, tailbone, area.

Cysts are usually small, about the size of a bean, but can grow to enormous size. The largest I have encountered filled the entire abdomen and the patient thought she might be pregnant. These cysts are often multiple, particularly when they are located in the sacral (tailbone) area. A few are large enough to extend into the abdomen and be mistaken for abdominal masses.

Symptomatic cysts usually cause pain. The typical symptom is pain in the distribution of the nerve or nerves on which the cysts are found. The cysts may also cause loss of neurological function such as weakness of muscles, loss of sensation on the skin, loss of reflexes, or even changes in bowel, bladder, or sexual function. The cysts may slowly grow and often erode bone leaving large cavities as they expand. They can follow nerves into the abdomen and present as abdominal masses often mistaken for tumors or ovarian cysts. Diagnosis is made on MRI with almost complete certainty. ]
http://www.tarlovcyst.org/index.php?...&id=7&Itemid=1
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Dear Dr. Long: You were referred to us by a neurosurgeon in Boston. My 24-y.o. daughter has Marfan Syndrome and numerous perneural cysts with the largest being at the lumbo-sacral area. Over the past year, she has become nearly incapacitated with back and leg pain - primarily leg. How does one determine if the pain is being caused by the cyst or by another, possibly more benign problem? (Physical therapy and chiropracty have exacerbated the problem.) Her MRIs show only the cysts and no significant disc disease. She has an area of erosion of a vertebral process from the pressure of the cyst. Although she has a Chiari Type I, she has no syringomelia. What testing modalities are used to differentiate for the cause of pain? It would seem that the only way to know for sure is to drain the cyst percutaneously with CT guidance and see if the symptoms disappear. However, if entry into the cyst is going to be made, wouldn't it make sense to do the whole procedure to avoid the necessity for re-entry? We are at the point where we have to figure out what is causing her symptoms in order to know what to do next. Can you please advise? Thank you for your time. Tricia

Thankyou for the info, unfortunately I seem to be a rare case that causes extreme pain, but your is reassuring

Hi Tricia, I see you posted a question to Dr. Long. Just wondering if you ever heard back from him. We called his office and have not had a reply as yet. My hubby has a 6.7cm Tarlov cyst. We have been to four doctors and finally found one to do the surgery but he has only done one is all his career as a neurosurgeon. We are looking for a second opinion. Please let me know if you heard from him and if he was able to help you. It is so hard trying to get someone to help with this problem.

Thanks! Betty

Just to clear up any confusion - the original post was not made by Dr Long himself, it was one of his articles posted by a member.

Hi everybody,

I am in great trouble for a friend of mine having Tarlov Cysts. Could you tell me how can I contact Dr. Donling Long in Baltimore?

Thank you in advance for your help.
Renny (Italy)